Abstract
The French National Consultative Ethics Committee on Health and Life Sciences (Comité consultatif national d'éthique, CCNE) was created in 1983. It is the oldest national ethics committee in Europe. Its task is to prepare advisory opinions and make recommendations about “ethical problems and societal issues raised by progress in the fields of biology, medicine and health”. The Committee was recognized by the legislator as an independent public body in 2004. It has written more than 100 opinions and recommendations in 27 years.
This paper examines the fundamental question whether the democratic legitimacy of the CCNE is adequate with respect to its role. On the one hand, this empirical analysis addresses the activities of the Committee, revealing that it exercises a real normative influence on the decision-making process in the field of biomedicine. The work of the Ethics Committee is an important source of inspiration for the legislator, as well as for judges and for public organizations acting in the fields of medicine, biology and health. On the other hand, the analysis focuses on the formal elements of the Committee's democratic legitimacy, as well as on alternative elements important for the legitimacy of independent public bodies in the French system. The analysis indicates that the material legitimacy of the CCNE is insufficient because its advisory opinions often go far beyond the designated legal task. That being said, the independence of the Committee should not be interpreted as a democratic deficiency. In fact, the independence of the CCNE is essential for the successful realization of its purpose. Indeed, the analysis indicates that the Committee was effective in developing independent positions on bioethical issues. So far, the CCNE's primary inadequacy, however, has been its failure to integrate the larger public in discussions of these issues.
Dagron, Stéphanie